Chronic pain – a guest post

In my whine about my latest medical issues, I mention chronic pain. Chronic pain is different from regular pain in the same way a bad mood is different from a blackshade depression. A beloved friend who knows more than most about chronic pain sent me the following. She gave me permission to reproduce it here.

Chronic Pain: A Rant by RLL

It isn’t fair-but it doesn’t give a shit about that.  It just hurts.

Most people don’t know you’re in pain.  They think you’re just in a bad mood or are just being bitchy or difficult and hard to get along with. Some still consider it malingering — a sign of weakness.  Especially when pain starts canceling plans. Others take it personally – if you loved them you’d still want to do this or that like you used to or promised you would.  It’s just a lame excuse.

Chronic pain and its side effects don’t show really, at least not like acute pain.  If you don’t have a body part split open, are not dripping blood, have something wrapped up, slung up or taped down, it can’t really be all that bad and you’re just being a big baby.  You’re just making excuses to get out of something.

You will never be in enough pain (visually) to justify most of the things you do, don’t do, cancel or change about yourself and your daily acts of living.  Thought processes, decision-making, emotional stability are now suspect.

You will never be disabled “enough” to use a handicap parking space and absolute strangers feel they have the right to grill you about it.

Pain will permeate every aspect of your psyche and your soul because it is now a permanent part of your essence.  Everything you say or think or do will be affected by how you deal with the fact of pain in your life.  Just like any chronic illness.

Unfortunately, pain has not risen to the level of illness where society is concerned.  It is a shortcoming, a weakness, a character flaw.  You don’t get judged for having the flu. You will get judged for how you deal with chronic pain.  Because you will never deal with it to other’s satisfaction.

There is a multi-faceted process to go through while you decide how you will choose to live with chronic pain.  If you try to find a cure to “beat this thing”, you will end up in shrink’s office.  Not necessarily a bad thing, especially if your shrink’s main focus in working with you to make you comfortable living inside your own skin.  Consider yourself lucky if you find someone who will help you become comfortable with being unable to do for the rest of your life less than you were able to do yesterday.  (There’s a reason I don’t write any more.)

The overwhelming majority of doctors will try to convince you that they can cure you, because they sure as hell won’t refer you out or concede failure.   This route involves endless tests and medications that will drop you to your knees.  Everyone has a cure to prescribe or opine about.  Hearing “All you need to do is…” will make you want to run.

The well-meaning, will tell you what you’ve done wrong in your life to give yourself this problem, then give you the name of their doctor, chiropractor, acupuncturist, herbalist, massage therapist, spiritual leader, nutritionist, and Dear Aunt Effie who will, most certainly, show you the error of your ways and fix you right up.  Yessiree, they’ll send you to the Real Cure.

If you decide to use prescription medications to help control the pain, or make it more manageable, or to take the edge off, you’ll need to grow a thick skin. People with illness take medicine.  People with pain take “drugs” – which is much different and considered much more of a character failing.  Doctors and health professionals will treat you like a drug seeker and repeatedly tell you that they don’t want to give you something that will actually take the pain away because they don’t want you to get addicted.  Which is your failing for being so weak. When they ask you how much of a certain drug you take, there are two standard answers:  shock that you’re taking so much (so you must be abusing it, rather than it’s ineffective for the job) or condescension if you’re taking a small amount or deliberately under-medicating – they take it to mean that the pain can’t be too bad if all you’re taking is…  Either way, you’re screwed.

There is also, still, a different standard for women.  I don’t know if that is an Orange County thing, but I’ve fought against it all my life.  I’ve seen no changes. Maybe someday…

No matter how understanding and sensitive your friends and partners and loved ones are, they can never really understand what it is like to deal with chronic pain.  They might give a shot at understanding that chronic pain is emotionally and physically debilitating, they still cannot help but reach their limit of tolerance for something they’ve never experienced and can hardly imagine in an extreme state.  Especially when the subject of their love and caring becomes too high maintenance.  At some point you become utterly, unabashedly, and unattractively human:  needy, weak, sniveling, unreasonable, incoherent, unwashed, smelly, scared, paranoid, hopeless, pathetic, in the way, useless, with no redeeming value, purpose or future.  So it invariably becomes about them instead – they’re not those things and they don’t want to put up with them in you.  Who wants to put up with that crap?  Nobody.  (As if we do.)

I have friends who no longer come around, a list of ultimatums from my partner, and a workplace that thinks all I need to do is get a prescription for hormones and take my blazer off while I work.

I also have a small core of people who were there for me before and are there for me now, for whom I have the utmost respect and a deep, deep love.  I never, ever forget that.

So, yeah, I’m pissed and I’m resentful and that’s the way the pick-up-sticks fell for me.  It could be worse.

So, yeah, I’m pissed that you now have to have chronic pain.  You deserve better.  If I could take it from you, I would.  But all I have to offer is my love and understanding.  I will always listen to/read the rants and I will always understand.  I will never, ever blame you.  You need a kindred spirit, here I am.  I might tease you but I’ll never blame you or make it about me.  Because this is only about you.

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3 Responses to “Chronic pain – a guest post”

  1. MHC Says:

    I had the misfortune to have a few months of chronic pain due to back problems. Until then I had no idea how completely pain can dominate your life, day and night (try waking up at 3am to pee and trying to figure out how to roll over when your back feels like it will snap if you breathe too deeply…). Inadequate sleep, chronic fear and anxiety, the endless balancing of medications. And it was only a few months. I’m not sure I could withstand an open-ended vista of it.
    I hope I will NEVER disrespect a pain sufferer. RLL, my heart goes out to you.

  2. Starre Thur Says:

    SO well said. Thank you.

  3. Starre Thur Says:

    I re-read this; slowly this time. There are tears in my eyes.
    If only I had had it to read everyday seven yrs. ago. The closest I came was a ‘living with a chronic illness handout’.
    Illness isn’t pain. At the time I did have an illness…cervical cancer…it went away. Ironically the steroids in the chemo kept the pain at bay. It was a miracle!
    I had five weeks with no pain. Everyone of my physicians … and there were a few…said my pain could not be … in some form or other they implied this…’real’ if the steroids took it all away…and they did (the steroids). My oncology nurses had to caution me many times about ‘overdoing’…”it’s the steroids”, they kept saying…obviously they had seen this reaction before.
    Thanks for allowing me to rant.
    Oh, and as soon as the chemo was over, my constant companion returned and to this day is still here.

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